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About elefky

I originally had it on my face and scalp. (22 years ago) First biopsy with dermatologist came back as folliculitis. Then when I had a new outbreak on my upper back, she was able to remove a nice clean blister and we got the diagnosis of DH. She started me on Dapsone (100mg/day) and gluten free diet. Now I take 25-50 mg/day. My understanding at the time was that DH was the skin version of Celiac. Did a lot of research on my own. I met Dr. Peter Green at a Gluten free Vendors Fair and he said that a diagnosis of DH IS a diagnosis of Celiac, even if no other symptoms. So I stay gluten-free

I was diagnosed with DH in 1995. I don't remember how long it took to clear up after going gluten-free, I was taking 100 mg Dapsone, now I take 25-50. The only true treatment is being gluten-free. Iodine will not cause a flareup but it can aggravate one. I don't mind continuing the Dapsone. It helps with the occasional slip. But I am as close to 100% gluten-free as possible.

After 21 years, I still take Dapsone daily. My dermatologist requires blood test annually.
Besides being gluten-free, try avoiding iodine. It doesn't cause a flare-up but it can aggravate one. Don't use iodized salt and avoid shellfish.

I was diagnosed with DH 21 years ago. I don't remember exactly how long it took to heal.
As the previous poster said, avoid iodine. If you use salt, do not use iodized salt. Avoid shellfish. Make sure you are eating 100% gluten free. Be very careful. Even now, I don't always know what I am reacting to because the reaction is not immediate. But my reactions are much less severe when I do react.
Good luck. Stick with the diet

Try this
http://www.meetup.com/Celiac/
It's a New York City meetup group.
Also if Nassau County might work for you - there is a meeting of a Long Island support group on Monday Oct 10 at 7:00 at Winthrop University Hospital in Mineola.
Dr Peter Green will be speaking.
http://www.csaceliacs.info/csa_chapter_23.jsp for more info

I have heard that there can be some issues with gluten free dental materials. I have to have a root canal and new crown work. Does anyone know what I have to ask the dentists about?
Thanks for any info

I guess I'm the only one who doesn't mind ener-g bread. I buy the "light tapioca" and now they have a new "corn loaf". It's not corn bread but a light bread. When you look at the calorie counts on most gluten-free breads, it's very difficult to fit into a Weight Watchers plan. The light tapioca is about 90 cal (I think) and on WW it counts as 1 point. The new corn loaf is 45 calories and 2 slices are 1 point. They are both fine toasted.

There is a new restaurant in Long Beach, La Bottega 36 E Park Ave., 516-442-0982. When I noticed that there is a restaurant by the same name in Oceanside, I looked them up on line thinking that they might be a chain. Their website is not finished but the Long Beach location said that they can make gluten-free panini. I called and they said yes. I immediately did a little happy dance and then had them fax my office a menu. So today we ordered. When I picked up I asked why they were the only location offering gluten-free and she (owner? manager?) said her husband has Celiac so she knows what to do. The rolls are from "Everybody Eats" and they wrap it in tinfoil before it goes in the press. She said eventually the other locations will do it but she has to educate them. So I just finished mine and it was delicious! I never eat sandwiches at work. This was a strange sight to those around me. Call them and they'll fax you a menu.

Also, for casual (fast food but very good) on A1A (Collins Ave) in Sunny Isles - POLLO TROPICAL
check their website, it's grilled chicken, almost all their stuff is safe. Great to take to the beach too
(I've been to Sunny Isles for a few vacations)

Chain restaurants - Carrabfa's carrabbas.com , Outback (there's always an outback around), PF Changs (there is one on Biscayne Blvd pfchangs.com Pizza Fusion (they use Still Riding Pizza's crust) Lame Advertisement
I have heard that The Melting Pot in some locations does Gluten free but I have never tried it. There is one on Biscayne. check meltingpot.com and call the location
NON-chains - ﻿FOGO DE CHAO (Brazilian in SOUTH BEACH) I have not tried them yet, I think I read about them on this forum.
I don't remember where I got this one from but want to check it out next time I go:
﻿"While not in Miami Beach, Kris Wessel's new restaurant Red Light has just opened right on the Little River in the Motel Blu (77th and Biscayne Boulevard, Miami). His food is stellar, prices very easonable.. and he understands gluten-free -- and will make a number of gluten-free items upon request. I have already eaten there a few times. He's still in the "first-opening" stages, but he anticipates in the not too distant future to being able to offer some gluten-free breads/pastries to his menu"
Good luck and have fun.

I'm with those that say eat before and bring a small snack. I think it's inappropriate to bring a "lunchbox" to an affair unless you are VERY close to the hosts and they understand. Eat before you go, eat a little something in the car, take small things in your bag (nuts, snackbar, raisins) and have something in the car waiting for you for the ride home.
This is not to say that we should be embarrased by our situation but just that the spotlight should be on the hosts